PITUITARY TUMOR CENTER at Johns Hopkins

B A L T I M O R E , M D M A R C H 2 0 1 0 INSIDE 1st Annual Pituitary Tumor Patient Education Day 2

Physician Presentations

Also in this issue: Patient Perspectives 3

A Message from the 4 Directors’ Corner Dr. Alfredo Quiñones-Hinojosa speaks with patients during lunch. n September 26, 2009, 140 patients and their family members gathered along with About the Pituitary Gland 5 O five Pituitary Tumor Center physicians for the Center’s 1st Annual Pituitary Tumor Patient Education Day, held at the Johns Hopkins Mt. Washington Conference Center. Hopkins faculty members spoke to participants about the latest treatments and research About the Pituitary Tumor 6 on pituitary disorders, including approaches from the fields of neurosurgery, radiation therapy and endocrinology. Center at Johns Hopkins The faculty presentations in the morning were followed by lunch and breakout sessions with each physician, organized by discipline, that offered patients a chance to ask individual questions in a small group setting. ―Usually one can see his or her doctor for a few min- utes,‖ said one participant. ―But here, [we had] the whole day.‖ The sense of empower- ment in the room was palpable as patients and family members took advantage of unparal- leled personal access to world-class Hopkins physicians.

Please stay tuned for further updates about the Pituitary Tumor Center throughout the year, including a date for next year’s Patient Education Day! 

Some of the volunteers from Dr. Quiñones- A Hinojosa’s who helped put the Pituitary

BOUT For more information about the Pituitary Tumor Center at Tumor Patient Education Day together. Thank you for all ofyour hard work! Johns Hopkins, please see page 6.

U Made possible by an unrestricted

educational grant from:

hopkinsmedicine.org > hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/pituitary_center/ PHYSICIAN PRESENTATIONS ― This is a team effort and no one doctor has all the expertise in the field. It takes a village. All people here are dedicated to give you the best possible care and to advance the field.‖ Henry Brem, MD ―Consistent with Johns Hopkins Medicine's mission, the Pituitary Center strives to set world standards of excellence in the care, research and medical education for disorders of the pituitary. Each of our patients is a unique individual requiring a personalized treatment plan and care. ‖ Gary Wand, MD

SCHEDULE

9:30-10:30 Registration and breakfast

10:30-10:35 Welcome (Roberto Salvatori, MD)

10:35-10:55 Sellar masses and pituitary tumors (Gary Wand, MD)

11:00-11:20 Surgical therapy of pituitary tumors (Henry Brem, MD)

11:20-11:40 Images from the operating room (Alfredo Quiñones-Hinojosa, MD)

11:40-12:00 Medical therapy of pituitary tumors and pituitary failure (Roberto Salvatori, MD)

12:00-12:20 Radiation therapy for pituitary tumors (Michael Lim, MD)

12:30-1:30 Lunch

1:30-3:00 Breakout sessions 1) Medical therapy (Dr. Wand and Dr. Salvatori)

2) Surgical therapy (Dr. Quiñones-Hinojosa and Dr. Gallia) Dr. Roberto Salvatori speaks to patients about medical 3) Radiation therapy (Dr. Lim) therapy of pituitary tumors. 2 PATIENT PERSPECTIVES

This is a team effort and no one doctor he 1st Annual Pituitary Tumor Patient Education T Day provided a wonderful opportunity for pa- has all the expertise in the field. It takes a tients to connect with their physicians and to hear about both standard treatments and new develop- village. All people here are dedicated to give ments in the field. ―[It’s] absolutely essential for patients to have knowledge of the kind we got today – you the best possible care and to advance very instructive in how we move forward with the tumor and after the surgery,‖ said one event attendee. the field. ―[It’s] highly important for the interaction and flow of information between doctors and patients.‖ Henry Brem, MD The Patient Education Day also gave patients a chance to meet others with similar conditions, going through the same treatments. Vanessa Powell describes her struggles to find a support network: ―When I found out I had a pituitary tumor, I tried to communicate with other people and I couldn’t find the right people to talk to. This [event] gave me an opportunity to network with the patients who had successful treatments in the past; I exchanged phone numbers and was able ―I have my life back.‖ to get information and talk to those who went through, or are going through, the same thing as me. Grace Garrett proudly shows off her old driver’s li- Today gave me more confidence to be able to make cense as a record of how far she has come since the right decisions about surgery in the future.‖ treatment for Cushing’s disease in 2007. Patients and their family members left the Patient Edu-

cation Day with hope for the future.  Ms. Garrett enjoyed hearing about—and seeing—the cutting-edge medical therapies and surgical techniques in use every day at the Pituitary Tumor Center at Johns Hopkins. ―Amazing, very informative, very fascinating [intraoperative] videos. I didn’t expect them or re- alize all the technology and medication therapies. It left me speechless.‖

■ For another patient perspective, check out Georgina Bu- chanan’s inspirational story at http://www.holamun2.com/ shows/hook-up/the-hook-up-neurosurgeon-alfredo- quinones 3 FROM THE DIRECTORS’ CORNER

Dear Patients and Families, We are delighted to welcome you and your family to our center. This past year was full of excitement and new discoveries. We welcome you to our first of many updates and newsletters in an attempt to in- form you about some of the exciting clinical and research advances in pituitary disease being carried out at the Pituitary Tumor Center at Johns Hopkins. We thank those patients and their families who at- tended our first annual Pituitary Tumor Patient Education Day, which we hope was informative and helped some to understand potential causes, diagnosis, and treatment options for patients living with pituitary problems.

As you probably know, pituitary tumors are common intracranial tumors. They occur in as many as 10% of adults. Although they are almost invariably benign, they can cause significant health problems, either by compressing the surrounding intracranial structures, or by producing excessive amounts of one or more pituitary hormones, or by damaging the function of the normal pituitary gland. The impact on patients’ lives and their families cannot be properly quantified, and it is this effect in our society that we take very seriously.

We believe that an integrated Pituitary Tumor Center, where the expertise of several physicians involved in the care of pituitary tumors is brought together, is the best way to develop an optimal course of therapy. There are, however, many unanswered questions regarding treatment strategies and the origin of pituitary tumors. Our group is working diligently on several fronts to answer questions that include find- ing the best diagnosis and treatment course depending on patients’ age and overall health status, the test- ing of new medications, and the discovery of genetic causes that place some people at higher risk of de- veloping pituitary tumors.

We hope that you will find this first newsletter informative - it will be the first of many more to come in which we will continue to update you, to share our enthusiasm and excitement for our work, and to demonstrate our commitment to improving your quality of life.

With warm wishes,

Roberto Salvatori, MD, Medical Director Alfredo Quiñones-Hinojosa, MD, Surgical Director The Pituitary Tumor Center at Johns Hopkins 4 ABOUT THE PITUITARY GLAND he pituitary gland is a pea-size gland located T behind our eyes and often considered the ―master endocrine gland.‖ It regulates most of the body’s hormonal balance. In particular, it con- trols the function of the adrenal glands, the thyroid, and the ovaries or testes. In addition, it pro- duces growth hormone (GH) which is necessary for growth during childhood and prolactin which is necessary for milk production after pregnancy and delivery.

The pituitary has two parts. The anterior lobe is the source of prolactin, GH, thyroid-stimulating hormone (TSH, controlling the thyroid), gonad- otropic hormones (LH and FSH, controlling testes or ovaries) and adrenocorticotropic hormone (ACTH, controlling the adrenal glands). The pos- terior lobe contains nerve fibers coming from the Frazier et al. (2009); citation below. brain (hypothalamus) storing oxytocin (necessary for uterine contractions during delivery) and anti- diuretic hormone (necessary to regulate the amount of urine we make).

The most frequent cause of pituitary malfunction is a benign tumor (adenoma) of the gland. Pituitary failure can also occur with pituitary infarction caused by hemorrhage into a pituitary adenoma (apoplexy), or infarction of the gland after a complicated delivery (Sheehan’s syndrome). Radiation therapy involving the pituitary gland and/or the hypothalamus can result in pituitary failure in up to fifty percent of patients at three to five years from radiation therapy. Finally pituitary surgery itself can cause damage of the gland.  SELECTED RECENT PUBLICATIONS

 Wand, G. Melatonin and the Pineal Gland. In DeGroot and Jameson's Endocrinology. 4th Edition. W.B. Saunders Company, Philadelphia, Pennsylvania. In Press.

 Baird CJ, Conway JE, Sciubba DM, Prevedello DM, Quiñones-Hinojosa A, Kassam AB. Radiographic and anatomic basis of endoscopic anterior craniocervical de compression: a comparison of endonasal, transoral, and transcervical approaches. Neurosurgery. 2009 Dec;65(6 Suppl):158-63; discussion 63-4.

 Mukherjee D, Zaidi HA, Kosztowski TA, Halthore A, Jallo GI, Salvatori R, Chang DC, Quiñones-Hinojosa A. Variations inreferral patterns for hypophysectomies among pediatric patients with sellar and parasellar tumors. Childs Nerv Syst. 2009 Nov 10. [Epub ahead of print]

 Raza SM, Conway JE, Li KW, Attenello F, Boahene K, Subramanian P, Quiñones-Hinojosa A. A modified frontal-nasal- orbital approach to midline lesions of the anterior cranial fossa and skull base: technical note with case illustrations. Neurosurg Rev. 2009 Sep 2. [Epub ahead of print]

 Mukherjee D, Zaidi HA, Kosztowski T, Chaichana KL, Salvatori R, Chang DC, Quiñones-Hinojosa A. Predictors of access to pituitary tumor resection in the United States, 1988-2005. Eur J Endocrinol. 2009 Aug; 161(2): 259-65.

 Salvatori R, Nachtigall LB, Cook DM, Bonert V, Molitch ME, Blethen S, Chang S. The SALSA Study Group. Effectiveness of self- or partner-administration of an extended-release aqueous-gel formulation of lanreotide in lanreotide-naïve patients with acromegaly. Pituitary. 2009 Nov 8. [Epub ahead of print]

 Salvatori R. Clinical management of growth hormone therapy in adults. Manag Care. 2009 Aug;18(8 Suppl 6):10-6.

 Mohamadi A, Martari M, Holladay CD, Phillips JA 3rd, Mullis PE, Salvatori R. Mutation analysis of the muscarinic cholinergic receptor genes in isolated growth hormone deficiency type IB. J Clin Endocrinol Metab. 2009 Jul;94(7):2565-70.

 Mathioudakis N, Salvatori R. Pituitary tumors. Curr Treat Options Neurol. 2009 Jul;11(4):287-96

 Kharlip J, Salvatori R, Yenokyan G, Wand GS. Recurrence of hyperprolactinemia after withdrawal of long-term cabergoline therapy. J Clin Endocrinol Metab. 2009 Jul;94(7):2428-36.

 Frazier JL, Chaichana K, Jallo GI, Quiñones-Hinojosa A. Combined endoscopic and microscopic management of pediatric pituitary region tumors through one nostril: technical note with case illustrations. Childs Nerv Syst. 2008 Dec;24(12):1469-78.

 Sanai N, Quiñones-Hinojosa A, Narvid J, Kunwar S. Safety and efficacy of the direct endonasal transsphenoidal approach for challenging sellar tumors. J Neurooncol. 2008 May; 87(3): 317-25. 5 ABOUT THE PITUITARY TUMOR CENTER FACULTY AND STAFF The Pituitary Tumor Center at Johns Hopkins Hospital offers exceptional expertise and integrated, individualized care in the diagnosis and treatment of hy- NEUROSURGERY pothalamic and pituitary disorders and hypopituitarism. Working as an interdis- Henry Brem, MD Gary Gallia, MD, PhD ciplinary team, the Pituitary Tumor Center is comprised of leading specialists George Jallo, MD from several departments within Johns Hopkins Medicine, including Endocrinol- Michael Lim, MD ogy, Neurosurgery, Ophthalmology, Radiation Oncology, Radiology, Otolaryn- Alessandro Olivi, MD gology, and Pathology. Alfredo Quiñones-Hinojosa, MD Jon Weingart, MD With more than 20 years of experience in the evaluation and management of patients with pituitary or hypothalamic tumors, Cushing's disease/syndrome, ENDOCRINOLOGY acromegaly, and other neuroendocrine disorders, our team collaborates with Roberto Salvatori, MD one primary goal - to improve the lives of patients through cutting-edge care. Gary Wand, MD Patients at the Pituitary Tumor Center also benefit from the latest brain tumor NEURO-OPHTHALMOLOGY research resources at Johns Hopkins, which further allow our specialists to Paul Hoffman, MD, PhD bring treatments to patients faster. Our foundation of working across disci- Neil Miller, MD plines to offer the best individualized treatment plans for our patients is truly Prem Subramanian, MD, PhD what sets us apart from other pituitary tumor programs.

RADIATION ONCOLOGY ■ For more about the Pituitary Tumor Center, visit Lawrence Kleinberg, MD http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/pituitary_center/

■ For more about pituitary tumor outcomes research, visit OTOLARYNGOLOGY http://www.hopkinsmedicine.org/neurology_neurosurgery/research/OutcomesLab/ Kofi Boahene, MD Michael Holliday, MD Questions or concerns? Contact the Pituitary Tumor Center at Johns Masaru Ishii, MD, PhD Douglas Reh, MD Hopkins: (410) 955-4526 Alfredo Quiñones- Roberto Salvatori, MD Rita Pach, RN, BSN PHYSICIAN ASSISTANTS Hinojosa, MD 1830 E. Monument St. 1830 E. Monument St. Jill Anderson, MS, PA-C Raven Morris, MS, PA-C 4940 Eastern Ave. B121 Suite 333 Suite 333 Baltimore, MD 21224 Baltimore, MD 21287 Baltimore, MD 21287 NURSING (410) 550-3367 (410) 955-3921 (410) 955-4526 Eileen Bohan, RN, BSN [email protected] [email protected] [email protected] Rita Pach, RN, BSN

Non-Profit Org PITUITARY TUMOR CENTER US Postage PAID at Johns Hopkins Permit No. 5415 Baltimore, MD If you would like information on how you can support research at the Pituitary Tumor Cen- ter at Johns Hopkins with a tax-deductible gift, please contact:

Kim Metzger Sr. Associate Director of Development The Fund for Johns Hopkins Medicine One Charles Center 100 N. Charles Street, Suite 434 Baltimore, MD 21201 410-516-5307 Email: [email protected]

Newsletter and photography (unless otherwise noted) by David Purger